Quote:
Originally Posted by en bloc
Sylvie,
What is involved in the testing? Have you considered just trying the antihistamines to see if they work? Many conditions are actually diagnosed by trying treatments for them...ie., like inflammatory neuropathies are sometimes determined by seeing if a course of steroids work? It's not like there is a specific test for inflammatory neuropathy...and the short course of steroids can show immediately whether inflammation is a factor int he neuropathy.
Speaking of bedridden, what have you tried for your dysautonomia? I don't want to detract from the point on your thread (which I think is perfect based upon some members comments and symptoms). I have a long history of dysautonomia (19 years) and might be able to offer you some information to help you get out of bed.
I am one of the many here with strange allergies, but that is also common with any autoimmune disease, due to the direct tie between the immune system and allergies (IgG, IgA, Igm...& most importantly, IgE (for allergies). So I have an interest in where this topic goes and all the good input that will likely get posted.
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Hi En Bloc,
Thank you so much for your interest....your posts are always so intelligent, informed and interesting......based on your history, I was wondering if you had been tested for MCAS.
Testing:...tryptase levels (sometimes normal with disorder); histamine, prostaglandins, and leukotrienes in an iced, 24-hour urine sample; sometimes a bone marrow sample.
Antihistamines:
I'm hesitant to try antihistamines because they tend to act antithetically and make me hyper ....yes Benadryl keeps me awake (although they do help my allergy symptoms). I would just like to know if I have MCAS before taking anything. I have so much trouble sleeping anyway (I'm sure you can relate).
Bed:
I am extremely uncomfortable standing and even sitting with my head unsupported. I do have a body worker/yoga teacher coming 3x/wk. She's great. I also push myself outside as much as possible. I never feel "normal." (I was very high-energy and athletic before all this). I thought it was simple fatigue....neuros concurred.
So I had my first tilt table test two weeks ago. My BP dropped from 149/90 to 80/60 before I was vertical. I began passing out and they stopped the test. I had no idea my BP is so labile.....this is why it is so hard to stand/walk. I also have POTS. I can't believe my neurologists were not on to this. (I found my own cardiologist...he thinks the cardio stuff is "severe," and found other heart issues as well.) I had a nuclear stress test last week and I'm waiting for results...I'll be going in Tuesday.
I would be very open to your suggestions and would love to confer....how do we PM on this site?
By the way, I had three panels of testing for autoimmune disease and nothing!
Again, thanks so much!
Sylvie